Wednesday, January 12, 2011

Could be this or this or this or that

Pretty much sums up my phone conversations with the pedi. He called me, we talked about 1/2 hour, he called me back about 10 mins later and we talked for another 20 mins. It was all conjecture and enough to make me insane! He wants an arterial blood gas sample because of some of Tomas' labs, and thinks it is a good idea to repeat the fasting study. Since those need to be done at the hospital he is laying it all at the feet of the hem/onc doctor whom we see tomorrow.
Clearly, nothing that is going on is enough to bring him to ER but this chronic drain on him is taking its toll. His SLT was out yesterday and before I gave her any updates she said he looked lethargic and not himself at all.
There is so much swimming in my head right now:

the iron - why such a severe deficiency? And if it is as severe as the docs are telling me then why just an iron supplement to bring it back up? It takes forever for those drops to work. His iron was 16 last week, maybe it will be 17 or 18 this week, but 50 is where they would like him. Long road there. Also, we need to find the cause of the GI bleed.  Because I am a woman on the edge, I tested his gastric acid on a urinalysis strip and it came out (very) positive for blood, even though there were no specks in it this time. That means (unless you are supposed to have blood in your stomach - which I don't know) he is bleeding all the time, not just when I can see it. His iron stores aren't really going to get better until we address that.

the hypoglycemia - He can only go about 4 hours without food before his sugars start to drop below 60. I have checked his urine during the fast for the last 3 days and it always has keytones in it. If you are familiar with Atkins you know that means your body is burning fat as fuel instead of sugar. Most people can go 18 hours or more before they have burned off all their sugar stores (from the liver) and their body moves into fat metabolism. It is the whole theory behind the induction phase of Atkins. But in Tomas' case he doesn't have enough sugar stored or is unable to access it. What gives? This was what that fasting study back in August was supposed to answer. The first one was the same as now - 6 hours into the study and his blood sugar was in the 30s and keytones in his urine. Just not supposed to happen - but two days later he went 18 hours during a fast, so he was went home with no further investigation. Here we are months later back at the beginning. This state of acidosis could also be the reason for his different breathing. Apparently the lungs have to go alkaline in order to compensate, which would explain Tomas' low Co2 levels and elevated anion gap. (this was what much of the phone call was about - the anion gap - sent me to the computer big time!)

the neutropenia and petechiae - I have researched and researched to try to find links between anything that is going on. Turns out that iron deficiency anemia, neutropenia, and petechiae can all be caused by a copper deficiency. How come no one checked this yet? Should he have a copper deficiency - no, but he shouldn't have an iron deficiency either. I'm going to ask on Thursday.

the IgM defciency - Total protein measured in the blood is made up of albumin and globulins. Tomas' albumin is normal, but his globulins are low. Also Tomas' Immunoglobulin M (IgM) is low. There is also a complicated link between iron deficiency and immunoglobulins that I am still trying to wrap my head around, but again I will ask on Thursday.

Those are the 4 big ones; anemia, neutropenia, hypoglycemia, and IgM deficiency.
Add in elevated liver enzymes, low serum globulin, low serum calcium, and an elevated anion gap and you have a giant mess. Once again, this blog is my mental unload, and orders the data swimming in my head. I have read more scholarly articles recently than I did while I was in college. In fact if YOU have read this far, God bless you and go take an aspirin.


  1. Perhaps you should become a doctor with all this training you are getting!
    I will pray for the doctors to get a clear vision of what to look for and of what could be going on.
    And I will pray for peace for you and your family.

  2. Ugh - and I didn't understand half of it :)

  3. I find myself wrinkling my brow when i read your blog, as if that will help me to understand, and try to wrap my head around everything!! Good God! can someone piece this all together!!!!

    Sending prayers!!

  4. Praying you away from the edge and hoping upon hope, that someone finds a definitive answer ... perhaps the exploring the copper might be a start.Even with my infinite "medical training",I too am at a loss :(